I was scrolling through family camping pictures from earlier in the summer and I kept on coming back to this one. This is why:
1. He’s writing his name. Kindergarten teachers everywhere are cringing at the use of all caps instead of one uppercase letter & the rest lowercase (note to his teachers: we’re working on it!)
2. The band-aid on his arm & his messy face. (S’mores evidence or dirt – not sure which)
3. Bare feet. On this morning we walked the shoreline for quite some time. When it was time to head back to the camp site, we realized that his little red rain boots were left a half-mile away.

I love how one image can help us remember so much. For us, this is what the age of five looks like.

The 2017 Nora Project Film Festival was an evening filled with enthusiastic hugs, laughter, and a few tears. The Nora Project began as a very personal undertaking of teacher Amanda Martinsen. Her cousin Lauren had just given birth to a little girl named Nora who had special needs. Lauren’s plea to Amanda was to educate her students in kindness and empathy so that the world would be a more gentle place for Nora and other children with special needs. And so, The Nora Project began.

The Film Festival is actually a celebration of a year-long project for students and teachers. The work begins back in the fall when the concept is introduced to the children and the classroom groups are matched with a “Nora Friend” – a child from the community with special needs. The goals of The Nora Project focus on teaching kindness, empathy, and inclusion. These can be abstract concepts, but with curriculum written to adhere to many Common Core standards, the teachers work to open the hearts and minds of their students by doing research, interviewing doctors and therapists, and having playdates with their new friend.

And on this beautiful evening in June, the documentaries were finally viewed at the 2017 Nora Project Film Festival. Upon arrival, Nora Friends, community members, and students were warmly greeted and ushered inside.

What I wish I could have captured was the little flurry of excitement that happened each time a Nora Friend entered the building. Several times I saw the middle school students with their faces pressed up to the glass, watching for their personal Nora Friend to arrive. Once they were spotted, other classmates and parents were summoned to greet them at the door.

Flash Magnets was a company that took pictures of all the guests and had complimentary magnets available to take home afterward.

An incredible buffet was available for all,

and the walls were covered with pictures and loving messages.

A sensory room was set up, along with an art room for the Nora Friends to do craft projects with the students. I spotted local celebrity Mary Cate and though I didn’t get to see much of Owen, a TV monitor was set up showing his Nora Project documentary from last year.

Mike Cho was capturing footage of the event and recording interviews about The Nora Project experience.

Eventually everyone made it into the main auditorium where The Nora Project was introduced and special thanks were given.

Jose’s family and teacher travelled from Georgia to participate. His documentary was watched by the entire group with a mixture of thoughtful silence, laughs, and teary eyes.

Additional documentaries were then screened in several classrooms. I was able to watch Asher’s and it was so neat to see the pride from the students as well as the families.

I only caught the very end of Tinley’s documentary, but was happy to see her gather with all of her new friends. Any friendship takes a commitment of time, listening ears, and a bit of fun. These Nora Friend relationships are no different.

At the end of the evening, goodbyes were said and hugs were given, but these new friendships will not be forgotten.

A Coming of Age Day is celebrated in a Japanese woman’s 20th year and the holiday is marked with special ceremonies, parties, and portraits. L didn’t have the ceremony or party, but she did have the opportunity to be dressed in the family’s kimono. This kimono was given to L’s aunt by her grandmother, (L’s great-grandmother) from the family’s kimono shop in Hiroshima.

L is the baby in the image below, held by her aunt wearing the kimono.

A woman who specializes in the art of kimono dressing was brought in to wrap L in all of the layers with their precise folds. The dressing took much longer than the photo shoot, but it was fascinating to watch.

I try to find a quotation to use in each blog post – and as I searched for something suitable for a Coming of Age portrait, this one appeared on my screen:

“My Dear Lucy, I wrote this story for you, but when I began it I had not realized that girls grow quicker than books. As a result you are already too old for fairy tales, and by the time it is printed and bound you will be older still. But some day you will be old enough to start reading fairy tales again.”

While I was photographing Baby E, this little one was eager to be a part of things. (As showcased in Baby E’s post.) So I sent her into her room to figure out what was special to her that she wanted to be photographed with when it was her turn.

I expected a doll and maybe a stuffed animal… I was not expecting this line up!

But in all actuality, it was so neat that she gathered all of her favorite things (and put them in a store display)! What a treasure this image will be years down the road.

I also love these types of images (below). These documentary images are my favorite because they not only show what the girls played with, but the room itself becomes part of the story.

Oh, how lovely to have a sister to play with!

Big sister had the sparkliest eyes.

She loves to write stories – so that’s what we captured. It was so neat to see how quickly she was able to focus once that notebook came out.

In a room full of cheerful color and toys, she created her own little oasis.

Afterward, the rest of the family joined us for some portraits outside, and Mom and Dad got a chance for their own updated portrait.

This is Tristan. He’s a little boy who takes his artwork very seriously. When he was bent over his work during his Stories of Autism session, he had that classic look to him like a little Prince George.

His mother’s essay follows:

Tristan

Most days, you can find Tristan bent over his drawing pad or a piece of paper, recreating pictures he sees on his current favorite movie or book. When he really likes what he draws, he jumps in the air with a huge grin on his face. Most of the time, if I’m quick enough I can snap a quick picture before he erases the image on his drawing pad. He’s a gifted artist and I can’t wait to see how far he’ll go!

Tristan also has Autism. He was diagnosed at age three after I realized that most kids his age were using full sentences. Tristan would scream if he was frustrated or drag his Dad or I to what he wanted, but he couldn’t tell us “I want…”

We thought this was strange because he used to talk. I remember taking his trick or treating before he turned two and he would say his own version of “trick of treat” to each house before we moved on. We noticed his language skills drop off completely when his brother, Graham, was born, but thought he regressed because babies don’t need to ask for anything…they just cry.

After his diagnosis, Tristan began ABA therapy. It was difficult at first, but now he completes each program with flying colors! Each week, his lead therapist needs to come up with new programs to attempt to keep up with Tristan’s progress!

Tristan is amazing. Life with Autism still isn’t easy, but he can talk to us. He can ask for something if he needs it. And he says “I love you,” which I never thought I’d hear him say.

When planning a senior photography session, I often have the family scope the location out in advance. This is especially important in the fall when the leaves change so quickly. The colorful trees you saw in someone else’s images might be gone by the time your session rolls around.

T’s mother found these incredible leaves for us, and I’m so glad that she did!

The trees in the background had lost many of their golden leaves, but it actually allowed more of the sunlight to filter through – giving us a beautiful, soft backdrop.

This next image might be my favorite. I can’t decide if she looks more like a 60s movie star or Lea Michele from Glee.

After we finished with Petrifying Springs Park, we headed to the Lake Michigan lake front so that her dog could have some space to run.

Being able to incorporate animals into senior sessions is so special. Documenting that relationship becomes even more significant when the senior may be leaving home in the fall. “Whoever said diamonds are a girl’s best friend, never owned a dog.”

I love this image because you can see the kindness in his eyes. He is a gentle soul with a big heart and desperately wants to do what is right. I loved Jack’s Stories of Autism photoshoot because he allowed me to document those quiet moments of solitude as well as his great pride in all that he has accomplished.

His mother’s essay follows:

Jack

“Stomp off the small yellow bus, open the garage door, shut the door, plop down my back pack, let the dog out, open the refrigerator door, take out food, prepare the snack, let the dog back in, sit down at the kitchen table and enjoy the snack, place dishes in sink, place iPod strap around my wrist, proceed downstairs with a gallop and walk on the treadmill for 30 minutes, come upstairs to bedroom and spend a great deal of the night creating a world of my own. Through drawing, building legos, reading, playing my guitar/piano, or taking a bath, I’m able to release from the stimuli that is crowding all around me.”

This is our son’s routine. It is his world. It is what keeps him grounded, day in and day out from the unusual and fearful world of change. Yet change is a big part of our world that cannot be avoided. As his parents, our role is to help him succeed, embrace his gifts, abilities and positively contribute to society.

At 6 months and on, we noticed Jack’s eye contact towards us had diminished. Around 12 months of age, a regression of simple words took place. This led him down a very isolated path, and consequently, he was in “his own little world.” We watched him slowly detaching from us. Nothing could have prepared us for the news we were about to hear. We were overwhelmed with the reality that our little boy did indeed meet the criteria for a diagnosis of moderate to severe Autism. How could this happen? “He used to call out mama…He used to look us in the eye.” The fact that he may never talk again or look at us was a pain in which we had never experienced before. It took us to our knees.

Fear can have such a paralyzing effect. Researching this disease was new to both of us. With the help of his psychiatrist and physicians, we were able to qualify for Intensive (40 hours a week) ABA therapy. It was amazing having speech therapists, occupational therapists, ABA in-home therapy, music therapy, and many various adaptations/tools to use to promote verbal, social and physical skills. Great prayer, love, committment and time would tell of what would unfold.

As many years went by, Jack soon became increasingly verbal. By the age of 4, he was able to say simple words and become more adaptive to social settings. Where we went, he went. He needed to be a part of our world too. We noticed that his raging outbursts and temper tantrums lessoned as we used more and more transitional pieces like social stories. He spent all of elementary grades in the public school system. After great prayer & deliberation, my husband and I decided to home school Jack for a total of 5 years. We found that the more we worked one on one at home, the better he did. His older brother Joe, therapists, friends and family all rallied around to make home school a success! We are so proud of the progress he made verbally, socially, educationally, and personally. He had always enjoyed drawing and music but he took those simple gifts to a new level. With a talented therapist by his side, Jack’s skills were strengthened. Slowly she taught him how to play the guitar and practice different drawing techniques.

By the end of his Sophomore year, Jack was much more verbal, showed much more eye contact, had now increased his math/reading level to 8th grade, was able to prepare and cook meals, do laundry, vacuum, order meals at restaurants, assist in purchasing items, play the guitar in church, strengthen his cartooning techniques and write stories himself. He had certainly surpassed what many thought he was capable of doing! It was time to transition back into a more educational social setting. We were pleased to see how well he adapted in the special education program at Horlick High School and thank God for the support of many during this journey. Our faith, family and friends encouraged us to believe and embrace God’s word. Jack definitely took this to heart! “With God all things are possible.” Matthew 19:26

Jack has more friends now, takes an independent course in art, serves in an afternoon work program bagging groceries at Piggly Wiggly and is busy working on his movies. Of course his success, doesn’t negate the on-going challenges with Autism. For example, he has had many episodes of anxiety, and outbursts of aggression. Sometimes these occur when pressures, demands, multiple schedule changes or feelings of frustration overwhelm him. Other times, we are at a loss as to what triggered such emotions. But all in all, his art, music, family, prayer, journaling and many other sensory tools have helped him get through these rough patches. His art work has flourished indeed. Over the past year, a 2 hour feature film by Jack Herron called the “Lego Guerilla Movie” has been created, shared, and enjoyed by many.

Jack will cross the graduation stage this Spring knowing he has accomplished much and much is still yet to be accomplished. All the pain, sorrow and frustration that comes in living with Autism does not compare to the growth, abilities, gifts and achievements that has made Jack so special and unique! He influences us daily to strive to be more patient and graceful towards our own challenges…to face life believing “You are His (God’s) masterpiece”.

This Stories of Autism photography session was very unique in that Joey’s mother requested that I document Joey with the Rapid Prompting Method (RPM) therapist that has “given Joey his voice.”

Arrangements were made, and on a Friday morning in February, I was able to witness his RPM session with Alyssa Roberts first hand. I have been able to see RPM used in person many times now, but watching a student who has only been able to make a few sounds, answer grade-level academic questions is truly remarkable.

From the Halo-Soma RPM website: “RPM uses a “Teach-Ask” paradigm for eliciting responses through intensive verbal, auditory, visual and/or tactile prompts. RPM presumes competence to increase students’ interest, confidence and self-esteem. Prompting competes with each student’s self-stimulatory behavior, and is designed to help students initiate a response. Student responses evolve from picking up answers, to pointing, to typing and writing which reveals students’ comprehension, academic abilities and eventually, conversational skills. RPM is a low-tech approach in that is requires only an instructor, student, paper and pencil.”

The essay from Joey’s mother follows:

Joseph

Joseph was born on September 1st, 2002. He had thick black hair and a healthy cry. No one could have prepared us, his parents, for the long journey ahead. He was a typical beautiful baby boy. He walked in his first year and began to say a few words. He loved playing with his brother and followed commands.

We noticed a change in him around 1 1/2 years of age. It was difficult to gain his attention, he was crying a lot and spinning around in circles. He regressed into a world of silence. For us it was like tripping on a gnarled branch crossing the way ahead. We weren’t sure if something might be wrong, but things did not feel right. Fear, darkness, and uncertainty set in, as if we had been pushed down a cliff and fallen into a deep ravine.

Joseph was evaluated and then evaluated some more. He began speech therapy at the age of 3. Eventually he was diagnosed with severe PDD-NOS at the age of 4. He spent the next 4 years in intensive ABA therapy, private speech therapy, and occupational therapy. Over time he began to lose the few words he had, but was able to understand language and follow simple commands. He was taught simple sign language and PECS to use at home.

Our young family climbed many hills together in search of an unknown destination. We tumbled over boulders and found our way around branches along the route. There were so many high points like when his older brother spent an entire summer trying to get him to say, “Hi,” and he did, or when we were able to go on vacation for the first time as a family, or go out to eat at a restaurant without a meltdown.

There were also many low points like his aggression and chronic illnesses. We tried so many different strategies in order to help Joseph: GFCF diet, B12 injections, vitamins, probiotics, and finally medicines. We kept drifting along the narrow path of solitude in hopes of finding a cure. Joseph remained silent. He had been in special education, speech therapy, and occupational therapy for well over a decade with minimal improvement. I remember when he was first diagnosed, I poured myself into books. I will never forget reading about a woman, Soma, from India, with a son, Tito, who was able to speak with the use of a letter board. It seemed so interesting to me at the time, but also seemed so distant and far away. Little did we know that eventually an Autism organization would sponsor Soma and her son to travel to the United States in order to teach others how to use this technique.

Almost a decade later someone from my area would travel to another state to be taught by Soma. She would learn how to use this technique, and a few friends, recommended that we try this therapy with Joseph. Feeling lost and hopeless, all we could see was a deteriorating path that had seemed to come to an end. We hired Alyssa to try Rapid Prompting Method with Joey last summer.

After a month, Joey seemed happier. It was like seeing sunlight peek through the forest cover of the treetops. He was indeed able to learn how to use a letter board and communicate lessons he had been taught. We had finally found a glimmer of hope for Joseph in our weary travels.

Joseph’s school was also supportive and wanted to be taught how to use this therapy with him in school. He went from a diagnosis that saw him as an 18 month old cognitively to someone who had the ability to take a pre-Algebra test and be in a regular education Science and Reading class in 8 months. This gift was the ability to give Joseph, at the age of fourteen, a path outside of his world of silence and solitude.

Maurice has already made an appearance on the blog on the post “2017 Stories of Autism Introduction.” If haven’t taken a look at that post already, please do so. It gives a general overview to the Stories of Autism project and a little insight into Maurice’s life. When I arrived at Maurice’s house, his mother had his box of drawing journals and notebooks on the table. She had already explained to me how much art was essential to the way he processes emotions. As Maurice sat down and began to look through his past work, I took note of his surroundings. Behind him is a case full of the family’s school art projects. He sits at a table that was hand-crafted by his father. Even the colors in the room and the little rainbows of light dancing on him suggest the value of art and creativity in this family.

It was a joy to witness.

From his mother’s essay:

Maurice

The other day Maurice told me about a man he knew who had an “angry blaming brain.” I asked him about what kind of brain he had, and he told me, “a courageous brain.” And he is so right! Over the last 17 years, Maurice has faced his fears, pushed through years of not being able to communicate, and has worked to achieve peace in his body and mind.

It was so hard when he was diagnosed at two years old. I think I cried every day for an entire year. I am a school librarian and I picked every baby book with care and read them to him a zillion times, and it hurt so much to watch him just stare at the pages and never say “duck” or “ball.” And then when he started to stim by making a little hum and grunt as he mindlessly turned pages, I felt something like horror. Where was my child’s mind and soul? Did he know who he was? What kind of life would he have?

And then I remember the day that he figured out that if he said the name of a stuffed animal, I would put it on his bed. He threw them off and I happily handed them back for hours, just to hear those glorious words!

Fast forward 12 years; he is seventeen. He independently rides a bike and swims to relax. He cooks food when he is hungry. He reads at a fifth grade level. He participates in theater and writes adaptations of folk tales that include family members and friends. He draws comic illustrations of people he knows that show exactly what they think and feel. He taught himself how to do that by watching Blue’s Clues!He trusts me now, despite all those years of frustrating and angry moments when we couldn’t communicate. It started when he allowed me to carry his transition toys, but now he hands me his feelings and his worries. We talk about how to “let ideas flow through your brain like a river” rather than get stuck on them.One day I called him at home and asked him what he was doing and he told me that he was “practicing life balance.” He still gets upset when he thinks he has done something wrong, but he believes me when I tell him that “practice will do the work.” In those golden moments, trust fills the part of my heart that was bleak and empty when he was young.

I’ll admit – when I received the email asking me to consider featuring Annabelle in the Stories of Autism gallery, I clapped my hands together in excitement. I’ve only photographed a few females for the Stories of Autism website, and it is important that they are represented. Girls on the autism spectrum are often misdiagnosed or under-diagnosed. (Here are links to a few interesting articles about that: here, here, and here.)

Annabelle’s mother warned me of her attachment to the Ipad – and her love of treats and balloons! (Note the placement of the Bottle Caps box in one of the images below.) Our photo session overlapped with her ABA therapy, so I had the unique opportunity to photograph her while working. I kept the therapist out of the image frame, but some of the skills that she was working on are documented below.

Her mother’s essay:

Annabelle

Before Annabelle was born, I felt something was “off”. When I was pregnant and she would kick, if others would try to feel her or the kicking she would move away. Somersault away. While in labor, she gave the nurses a run for their money as they tried to readjust the belly monitor due to her constant moving. Shortly after Annabelle was born, I came to a conclusion. Either I was the worst mother in the world, or something was off with my child. She would cry non-stop. My former pediatrician dismissed it as colic or GERD, however; the crying continued on. Sleep was also unusual. She wasn’t sleeping, hardly ever. I thought newborns were supposed to sleep often and wake frequently to eat.

When Annabelle was 4 months old I noticed she wasn’t hitting her gross motor skills. A nurse practitioner suggested we consult with birth-to-3 to have her evaluated. With my new pediatrician’s approval, we enrolled into birth-to-3 for physical therapy when she was 6 months old. Little did I know, this would be the beginning of our non-stop therapy schedule. She progressed physically with birth-to-3, eventually walking at 14 months, but speech delays became evident. We eventually had Annabelle tested for autism when she was 22 months old. We were told it looked like “just a speech delay.” Hearing Annabelle would be ok, we decided to expand our family. Annabelle continued to be non-verbal and have delays.

After months of ongoing concerns with Annabelle we decided to get a second opinion when she was 2 1/2. It’s Martin Luther King Day 2012, I am holding Annabelle’s newborn sister and sitting in another pediatric neuropsychiatrist’s office. This time, the results were different, “Annabelle has moderate autism, she needs intensive ABA therapy right away, but your commercial insurance probably won’t cover it, so you have to sit on a wait list for 2 years. She is going to need ongoing services and specialized therapy”. This time, the diagnosis was real.

While waiting on the statewide ABA wait list, we enrolled Annabelle in every service possible. This included private speech, private occupational therapy, a group speech/OT class, and she remained in the birth-to-3 program. Once Annabelle turned 3 we enrolled her in our school district’s early childhood program. School then provided speech, OT, and PT. We finally began ABA in summer 2013 when Annabelle was 4. With ABA we started with the smallest tasks, such as sitting still for just 3 seconds. She did intensive ABA for 35 hours a week for 3 years, plus school and OT. It was a full-time job for such a little girl.

Today Annabelle is in the 1st grade. She has a modified (shortened) school day. Her school is amazing. We are so proud of how far she has come! She is sitting with her peers, coloring, cutting, gluing, listening, and participating with her class. At school she also receives speech therapy, occupational therapy, special education and specialized gym. Annabelle has a wonderful 1st grade teacher and special education teacher. She also has a speech therapist, occupational therapist and several aides that help her and stay by her side. She enjoys her classmates and they enjoy her. Her class has learned how to exchange PECS with her. She has even made a best friend! She sits in the regular lunch room and participates in recess with her peers. Fortunately our school is very inclusive and collaborative with us. School has been such a positive experience for her and we are incredibly thankful for this.

Annabelle is also in ongoing ABA which consists of 20 hours per week. Therapists are continuously coming in and out of our house, 6-7 days a week, and most holidays. Some of them feel like part of our family. The ABA program requires a certain percentage of parental involvement as well, so my husband and I are participating in some sessions and parent training. Annabelle is still considered non-verbal as she has some words, but not many. She communicates with PEC’s (a picture exchange system). The goal is always to develop communication verbally, but to give her other means to communicate if regular verbal speech doesn’t develop.

Our biggest current challenge is communication. With Annabelle being non-verbal I can see how she gets extremely frustrated with not being able to tell us what is wrong or what she needs. When she is really frustrated, she may try to hurt herself with self-injurious behavior. She continues to make strides with PECS, but still has a long way to go. As she grows more proficient with PECS we will be exploring the option of teaching Annabelle how to use an augmentative and alternative communication (AAC) application where her PECS are on an iPad and when she touches them a voice is created.

Annabelle amazes us daily. She continues to learn new tasks, try new things and participate in activities she would never try before. This week we celebrated her attending first field trip with her class. We get excited when she tries new foods. We all called and texted each other with excitement when she started eating peanut butter. You learn to celebrate any achievement. Her love for nature is unmatchable. When she stops to stare at the trees blowing in the wind it makes me stop too. She will like to stand in the driveway to feel the rain on her face. She loves Mickey Mouse Clubhouse, her iPad, french fries, chips, bottle caps candy and long car rides. Occasionally we hear a clear word and it’s music to our ears. Her latest word is “eeeeeeeating” when she’s hungry or eating. It’s so exciting to hear!

As parents we hold hope that Annabelle will continue to grow, develop, learn how to communicate and just be happy. As a parent you do the best you can. You listen to the doctors, teachers, therapists and experts, take their recommendations, collaborate, try new programs and therapies. But in the end you know your child best. If things don’t work out, you readjust. I’ve learned to take things one day at a time, sometimes one hour at a time and occasionally sometimes one minute at a time.

From the first few sentences of his e-mail to me, I knew that Chris needed to be part of the Stories of Autism gallery. His perspective is incredibly unique in that he was diagnosed with autism as an adult. Upon learning this, he was forced to look back at many of the experiences and relationships that have shaped him as a child and young adult. Chris spent countless hours at the library researching autism, so it was fitting to document his time there.

From Chris:

At 30, I was diagnosed as high-functioning autism spectrum (formerly known as Asperger’s until the DSM-V manual change), when I sought counseling for depression and anxiety, common on the spectrum when trying to fit into the neurotypical world. It came as a shock. I wondered if my fiance would stay with me. Would my supervisor think I was competent to do a social job as Program Director of a nonprofit? I began reading all of the books about the autism spectrum at the library.

It explained a lot going back to childhood; in talking to my best friend’s mom, I learned he was also on the spectrum. What helped a lot with self-acceptance were celebs that came out like Daryl Hannah, Dan Ackroyd, Susan Boyle, Eminem, etc.

I connected with Autism Solution Pieces, a nonprofit started by two autism warrior moms. Since there are not only adults with autism, but the children on the spectrum are growing up, we formed an adults group called ASPies Unite, beginning with a bowling outing. ASP has since invited me to join their board of directors.My diagnosis gave me awareness to work on challenges and build them into strengths. Although I have quality of life with a family, a degree, and a career, I don’t want to pass as normal- what’s that anyways? I can be a role model and inspire hope with my story. A diagnosis helped with awareness to learn more about myself, to build weaknesses into strengths, like improving on studying body language and remembering to smile or make eye contact. Along with the challenges come gifts, and I wouldn’t change if I could. I can bring hope for others to have independence and a meaningful life as they define it. As my dad told me growing up, “You can be whatever you want to be and do anything you put your mind to.” I’ve fully come to love and accept myself, and I’m proud of who I am.